Listen, Bucko....get your own cake!
1st birthday
At the beach with Mommy
Well, at long last I have succumbed to pressure and am updating Erin's blog. It's not for lack of motivation (or prompting by a number of regular readers!). It is simply hard to find the time to sit down and organize my thoughts with all that has happened. Since the last update, we have celebrated Erin's 1st birthday, and this past Friday we celebrated the one year anniversary of bringing her home from the hospital.
Last night, Sheila and I sat at the kitchen table over a bottle of wine and shared memories of those first few days at home with Erin. We laughed about bringing her home and our first gaffe as parents. We brought her in the house and elected to not wake her by removing her from her car seat, so we set her on the family room floor to sleep and wake on her own. Ten minutes later, we were both in the master bathroom when we turned and looked at each other in horror as we simultaneously realized that it had taken us only a few minutes to forget about Erin and leave her alone in the family room, three floors down. We flew down the stairs to find her sound asleep, oblivious of what incompetent parents she had inherited. I remember thinking that we were incapable of raising this child if we couldn't even remember to watch over her in the first ten minutes of her being home. Needless to say, it never happened again.
The first few nights were very stressful. I can remember waking what seemed like every fifteen minutes to see if she was still breathing. It felt like we were walking on egg shells with her being so fragile and her health still so questionable. It seems like another lifetime ago.
Today, it is hard to remember what life was like before Erin. It seems like she has always been with us. At times, we do reminisce about our ability to pick up and go on a moments notice, and how we rarely spent consecutive weekends at home. Traveling around the world and enjoying life seemed like the height of living. Then we take a look at Erin and realize that however fun that lifestyle sounds, nothing comes close to having this precious little one in our lives and that we wouldn't trade one minute of it for anything else.
She has developed from a little blob that did nothing but lie there and occasionally look at you, to a toddler with a huge personality. She has distinct likes and dislikes, opinions, and a willingness to let you know exactly what she is thinking and feeling (wonder where she gets that from?). She is perpetually happy, outgoing, and curious about anything and everything. Favorite activities include turning on and off the first floor lights from the Crestron controller, a source of never ending delight. Opening a drawer and pulling out the contents one by one to deposit on the floor is one of life's great joys at 13 months. Dancing with her shadow in wonder and amazement as it moves in perfect syncopation is another fun activity. She has a corner that she likes to crawl into, underneath a table, where she can sit on her boppy away from everyone and "read" a book. From time to time, she comes out to get another book to drag back there.
She is changing too fast. I was on the west coast most of this week, and even in five days I can see changes in her. Since I left, she has decided that she likes giving kisses, and gives them willingly now whereas previously they were rationed out only on rare occasions as an accommodation. Every day seems to bring more expression of her thoughts and feelings. She has mastered the look of complete disdain when she disagrees with something. I am sure I will get to know that look quite well.
There is so much information to share since the last time I updated this blog. A month or so ago, we had an appointment with Erin's cardiologist, Dr. Jeff Gossett. It included an echo cardiogram, which surprisingly Erin endured. I say surprisingly because it required her to lie quietly for 45 minutes or so, and staying inactive and still is not something that this child understands or accepts. Sheila did an amazing job by lying on the bed with Erin and soothing her, and she allowed the technician to do his job in getting the desired readings. Jeff was a little disappointed that Erin's blood oxygen sat levels weren't higher (they are typically high 80's), so that was disappointing. He elected to continue her on her three times per day Viagra routine, but has cut out all other medicines. We were hoping that she would be doing well enough to discontinue the Viagra but it wasn't to be. It is sobering to discuss future surgical procedures as she seems to be the picture of health and happiness. Looking at her, you forget about her challenges and see only this amazing child who is off the charts in terms of her development, intelligence, and curiosity about life. And yet, there is a grossly malformed heart beating in her little chest that continues to outperform any medical explanation for now, and will require fixing at some point in the future. It continues to be a wait and see game. As long as she continues growing and developing, we get to wait. The moments when we discuss the realities of her future with Jeff are very depressing to me. It's like running into a brick wall.
The truly good news is on the neurological front. We have been worried about how the stroke would manifest itself. She recently saw the head neurologist at Children's, and he was thrilled with how well she is doing. She exhibits almost no signs of the stroke, other than a tendency at times to keep her right hand clenched and close to her body. She tends to favor her left hand, yet has complete usage and dexterity with her right. We work with her on this, and she is slowly getting over the tendency to always reach with the left. Her early intervention professional Allison saw her a few weeks ago and she too was thrilled with Erin's progress, and stated that there seemed to be nothing impacting Erin physically, at least yet. We aren't out of the danger zone yet, but she seems to be overcoming a very serious stroke with little or no residue and so we continue to hope for the best.
As always, I can't say enough about Children's Memorial or the wonderful people who work there. Everyone in the cardiology clinic seems to know Erin and a visit there prompts a steady stream of nurses to come by her room with well wishes and wanting to see how she is doing. I have gone on the board at the hospital, and have the opportunity to see the organization from a different perspective, which only accentuates my admiration and respect for the dedication and performance of the staff.
As I write this early on a Sunday morning, I hear Erin on the monitor as she begins to stir. We have an camera trained on her crib in both homes that illuminates the picture as if it were daylight, and I can watch her movements as she sleeps. She is the picture of tranquility. Sometimes we sit and just watch her sleep. She has the strange habit of sleeping on her knees, with her butt in the air and her hands underneath her. It is comical to watch. Even better is when she is trying to fall asleep, which involves a series of movements where she bounces all over the crib. She plays with her bear, cruises from one end to the other, samples all three of her Binkies, and lies there kicking her feet. Other times she is content to lie on her back and talk or sing to herself in a language only she can understand. It is a show like nothing else on TV.
I hear her talking. It's time to go and start her day. We will play in the crib, examine each Binky in great depth, and look out the window to see who is walking by, hopefully with a dog. How great is that?
Erin's daily routine is pretty set. She wakes between 6:30 and 7:30. I come home from the gym about the time she wakes up, and often am the one to get her out of bed. After having her formula and changing her diaper, she spends the first 30 - 45 minutes in bed with us. I don't get to work very early anymore, but it is a small price to pay to get that time with her. She is talkative, playful, and so happy to be with both of us. We also spend a good amount of that time with her sitting in my lap in my office, listening to her music. She loves "This Old Man" and "The Wheels on the Bus Go Round and Round." She starts wiggling and swaying the minute she hears any music, and loves to dance. When one of her favorites comes on, she gets a big smile on her face, and dances along. One song is like the twelve days of Christmas, only the twelve days of animals. When they get to the part of the chorus that mentions the duck, she makes a quacking noise that she has learned to associate any time she hears mention of or sees a duck. The downside to her love of music is that all day long I have kids songs playing on the mental iPod player in my head. I sometimes realize I have been humming the theme song from the Mickey Mouse Club for the last hour.
The other fun morning activity (for her) is the phone. She loves playing with the phone, and the highlight is to keep the phone off the hook long enough for the emergency beeping to begin, letting you know that your phone is off the hook and needs to be hung up. She gets a huge smile on her face, starts dancing to the beats and after listening for a few seconds, reaches over and depresses the phone switch to start the process all over again. She never tires of playing with the phone. She has an old Blackberry that she loves to talk into. She talks into it, then hands it to you to talk. This goes on over and over and over. She seems to love the idea that she can carry on a conversation on the phone like an adult. Given how little I like talking on the phone, she must get this from her mother.
Around 8:30, she eats breakfast. She is a big eater of regular food, and has become much better about taking her formula as well. She loves to try new things, although she is initially very cautious about smelling and closely examining anything new before she puts it in her mouth. She prefers to feed herself, and loves nothing more than smearing whatever she is eating all over herself and you too if she can get close enough. She sits in her highchair, slowly eating and talking and singing to herself throughout a meal which can often take 30 minutes. I guess she is in no hurry to be anywhere.
After breakfast is playtime until 9 or 9:30, when she goes down for a nap. If it is a Monday or Thursday when our housekeeper Helen is there, playtime involves Erin's strange fascination with Helen. Those two have a mutual love for each other, and it is interesting to watch just how taken Erin is with Helen, and with the vacuum cleaner. I can't stand to be in the same house as a running vacuum cleaner, while Erin adores it.
Erin typically sleeps for a couple of hours in the morning, and up to two hours in the afternoon. In between is more playing and lunch. Dinner is around 5:30, and we usually take her for a walk after dinner. We love walking through our neighborhood. It is filled with people and things to look at, especially large dogs. Erin gets so excited when she sees a dog, which she calls Ba-Ba (her way of saying bow wow?). We have a great park at the end of our block which is filled with children of all ages, including a number Erin's age. The park is usually packed with kids and parents playing on the equipment. I used to drive by the park every day and wonder if it got tiring going there day after day. I now know the answer - it does not. We make new friends, see lots of ba-ba's, and push Erin in the swing, something she never tires of. How lucky to have this park.
Erin's daily routine is pretty set. She wakes between 6:30 and 7:30. I come home from the gym about the time she wakes up, and often am the one to get her out of bed. After having her formula and changing her diaper, she spends the first 30 - 45 minutes in bed with us. I don't get to work very early anymore, but it is a small price to pay to get that time with her. She is talkative, playful, and so happy to be with both of us. We also spend a good amount of that time with her sitting in my lap in my office, listening to her music. She loves "This Old Man" and "The Wheels on the Bus Go Round and Round." She starts wiggling and swaying the minute she hears any music, and loves to dance. When one of her favorites comes on, she gets a big smile on her face, and dances along. One song is like the twelve days of Christmas, only the twelve days of animals. When they get to the part of the chorus that mentions the duck, she makes a quacking noise that she has learned to associate any time she hears mention of or sees a duck. The downside to her love of music is that all day long I have kids songs playing on the mental iPod player in my head. I sometimes realize I have been humming the theme song from the Mickey Mouse Club for the last hour.
The other fun morning activity (for her) is the phone. She loves playing with the phone, and the highlight is to keep the phone off the hook long enough for the emergency beeping to begin, letting you know that your phone is off the hook and needs to be hung up. She gets a huge smile on her face, starts dancing to the beats and after listening for a few seconds, reaches over and depresses the phone switch to start the process all over again. She never tires of playing with the phone. She has an old Blackberry that she loves to talk into. She talks into it, then hands it to you to talk. This goes on over and over and over. She seems to love the idea that she can carry on a conversation on the phone like an adult. Given how little I like talking on the phone, she must get this from her mother.
Around 8:30, she eats breakfast. She is a big eater of regular food, and has become much better about taking her formula as well. She loves to try new things, although she is initially very cautious about smelling and closely examining anything new before she puts it in her mouth. She prefers to feed herself, and loves nothing more than smearing whatever she is eating all over herself and you too if she can get close enough. She sits in her highchair, slowly eating and talking and singing to herself throughout a meal which can often take 30 minutes. I guess she is in no hurry to be anywhere.
After breakfast is playtime until 9 or 9:30, when she goes down for a nap. If it is a Monday or Thursday when our housekeeper Helen is there, playtime involves Erin's strange fascination with Helen. Those two have a mutual love for each other, and it is interesting to watch just how taken Erin is with Helen, and with the vacuum cleaner. I can't stand to be in the same house as a running vacuum cleaner, while Erin adores it.
Erin typically sleeps for a couple of hours in the morning, and up to two hours in the afternoon. In between is more playing and lunch. Dinner is around 5:30, and we usually take her for a walk after dinner. We love walking through our neighborhood. It is filled with people and things to look at, especially large dogs. Erin gets so excited when she sees a dog, which she calls Ba-Ba (her way of saying bow wow?). We have a great park at the end of our block which is filled with children of all ages, including a number Erin's age. The park is usually packed with kids and parents playing on the equipment. I used to drive by the park every day and wonder if it got tiring going there day after day. I now know the answer - it does not. We make new friends, see lots of ba-ba's, and push Erin in the swing, something she never tires of. How lucky to have this park.
Sometimes we go for a walk with the stroller, other times she walks between us, holding a hand on each side. At times, when she thinks we aren't looking, we catch her looking up at us, taking turns looking at each of us with the biggest smile on her face. It's a look of joy and happiness, and one that we echo completely. She seems truly happy at all times. So are we.
The other nightly activity is sitting on the floor of the family room playing, which often involves reading a couple of books. Erin will go over to her book bin, pull out a favorite (often "Blanky" or "Binky") and bring it over to me to read while she climbs into my lap. She loves to turn the pages, and goes back over and over to favorite pages. When done with the book, she goes and gets another and we repeat the process. When being read to, she has a big smile on her face and continually looks up at me as if to let me know how happy it makes her to be doing this.
Bedtime is around 7:30. We take turns putting her to bed. Erin's favorite activity is having her teeth brushed, which Sheila has coined "brushy-brushy." Erin gets a huge smile on her face when you mention the phrase, and looks to her bathroom in anticipation. She takes her last formula of the day, and after reading a few books, she goes to sleep. She has become a pro at going to sleep. She rarely cries when we put her down for the night or a nap, and if she does it is for only a few seconds. If she has difficulty falling asleep, she talks to herself rather than cry.
Erin talks incessantly. She is a non-stop babbler, going on and on while interacting with you. In addition to nonsensical baby talk, she is slowly gaining a vocabulary. In addition to Ba-Ba, she also has down bye-bye, night night, Da-da,and the favorite "I pooped!" We still can't get her to say Mama, though.
I want to do a better job of updating the blog, for the purposes of documenting Erin's life for her (and for us) over the years. I think it will be valuable to her at some point to have an understanding of what her life was like, during the years that she will retain little memory of. I want to make sure I document days like today...nothing out of the ordinary. It's the ordinary days that I want to remember best.
We spent this morning like every other morning, playing in Mommy and Daddy's bed. We had breakfast, then we walked over to Starbucks. Erin climbed onto the table and sat there, content to suck on her sippy cub and amuse herself by reaching into the bag containing her treats and pulling them out one by one to eat. When she grabs one successfully, she gives a little laugh that sounds like a sinister "I just got away with something I am not supposed to laugh." She shared my scone and my smoothie with me, happily sucking on the straw. We did what we do every single day...we laughed and laughed. It's pretty good.
The other nightly activity is sitting on the floor of the family room playing, which often involves reading a couple of books. Erin will go over to her book bin, pull out a favorite (often "Blanky" or "Binky") and bring it over to me to read while she climbs into my lap. She loves to turn the pages, and goes back over and over to favorite pages. When done with the book, she goes and gets another and we repeat the process. When being read to, she has a big smile on her face and continually looks up at me as if to let me know how happy it makes her to be doing this.
Bedtime is around 7:30. We take turns putting her to bed. Erin's favorite activity is having her teeth brushed, which Sheila has coined "brushy-brushy." Erin gets a huge smile on her face when you mention the phrase, and looks to her bathroom in anticipation. She takes her last formula of the day, and after reading a few books, she goes to sleep. She has become a pro at going to sleep. She rarely cries when we put her down for the night or a nap, and if she does it is for only a few seconds. If she has difficulty falling asleep, she talks to herself rather than cry.
Erin talks incessantly. She is a non-stop babbler, going on and on while interacting with you. In addition to nonsensical baby talk, she is slowly gaining a vocabulary. In addition to Ba-Ba, she also has down bye-bye, night night, Da-da,and the favorite "I pooped!" We still can't get her to say Mama, though.
I want to do a better job of updating the blog, for the purposes of documenting Erin's life for her (and for us) over the years. I think it will be valuable to her at some point to have an understanding of what her life was like, during the years that she will retain little memory of. I want to make sure I document days like today...nothing out of the ordinary. It's the ordinary days that I want to remember best.
We spent this morning like every other morning, playing in Mommy and Daddy's bed. We had breakfast, then we walked over to Starbucks. Erin climbed onto the table and sat there, content to suck on her sippy cub and amuse herself by reaching into the bag containing her treats and pulling them out one by one to eat. When she grabs one successfully, she gives a little laugh that sounds like a sinister "I just got away with something I am not supposed to laugh." She shared my scone and my smoothie with me, happily sucking on the straw. We did what we do every single day...we laughed and laughed. It's pretty good.
